Inflammatory Bowel Disease Patients Join with the Crohn's & Colitis Foundation of America to Voice Concerns Amidst Affordable Care Act Repeal Efforts



January 13, 2017

NEW YORK, NY – With a vote expected to occur today in the U.S. House of Representatives on a budget resolution which would begin the process of considering a repeal of the Affordable Care Act (ACA), several inflammatory bowel disease (IBD) patients voiced their concerns about the future of their healthcare.

“I remember life [before the Affordable Care Act] when no one would insure me because of my IBD,” said Brooke Abbott, an ulcerative colitis patient who also lives with Ankylosing Spondylitis. “I lost everything except my child. But he almost lost me. I’m petrified now.”

Abbott is one of the 1.6 million Americans living with Crohn’s disease and ulcerative colitis, two of the chronic digestive diseases that fall under the IBD umbrella. They are painful, medically incurable diseases that attack the digestive system. Crohn's disease may attack anywhere along the digestive tract, while ulcerative colitis inflames only the large intestine (colon). Symptoms may include abdominal pain, persistent diarrhea, rectal bleeding, fever, and weight loss. Treatment of these diseases is enormously complex and oftentimes requires expensive medications, surgeries, hospitalizations, and more.

“As a patient with a pre-existing condition, I am worried that I could lose my insurance,” said Aaron Blocker, a Crohn’s patient who also lives with Avascular necrosis. “My health insurance plan isn’t the greatest and I pay a lot for a premium monthly with a high deductible. However, it’s still better than no insurance with how expensive my care is yearly.”

“The ACA provision that allows disabled children to stay on their parents' insurance past the age of 25 is the very reason I was able to get on a proper insurance plan from a catastrophic insurance plan and not go bankrupt,” said Jaime Weinstein, a Crohn’s patient who also lives with Psoriasis, Hashimotos thyroiditis, and other chronic illnesses. “After over a decade of improper care, I am finally receiving proper medical care and treatment for my Crohn’s. The care I have received because of this provision saved my life, and I am terrified of what will happen to me and others like me if these patient protections and other affordability measures are repealed.”

Last week, the Crohn’s & Colitis Foundation of America (CCFA) released the following statement urging Congress to maintain stability in insurance coverage for patients with chronic illnesses as the process of considering repealing the Affordable Care Act (ACA) begins:

“For patients living with chronic illnesses like Crohn’s and colitis, healthcare coverage is essential to ensure they receive the care necessary to manage their complicated disease,” said Michael Osso, President & CEO of CCFA. “Our patients experience numerous barriers to care – including difficult utilization management protocols and high cost of care. Repealing the Affordable Care Act without simultaneously enacting a replacement would not only increase the barriers our patients have to combat, but it would leave many in limbo without certainty that they would have the insurance they depend on for critical doctor’s appointments, medications, medical procedures, and much more. If we are to repeal the Affordable Care Act, it must be done so in a way that provides a replacement that will ensure stability in coverage, maintains the basic patient protections enacted by the law, and prohibits insurer discrimination against patients with chronic diseases.”

As Congress considers a repeal of the ACA, CCFA urges that:

  • Stability in coverage be maintained by accompanying any repeal effort with a replacement that meets the needs of the 117 million Americans living with one or more chronic illnesses;
  • Discrimination against patients with pre-existing conditions continues to be prohibited;
  • Young adults can remain on their parent’s insurance until age 26;
  • Out-of-pocket spending is limited and lifetime annual caps are prohibited; and
  • Insurance coverage meet certain design standards to combat discrimination and ensure that patients have access to the treatments, services, and provider network they need.
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